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Please help us with NH Lymphoma. My wife is terminal.

vwandstudebaker profile image
13 Replies

HELP !!! My wife is terminal with NH Tcell Lymphoma. Because of where it is, she can not eat. They tried EPOCH, but after the 4th of 6 rounds, they quit because the said it wasn't working. This is Shands in Gainesville Florida. We went to Tampa to a place called Moffit for a second opinion. They concurred with her cancer doctor.

We are told this is a rare form, but I don't know for sure why. Maybe where its located in her small intestines above the stomach.

I have searched and asked, but no one has come up with an answer. In late Dec, she was told by a palliative care doctor that its terminal and has 2 weeks to 6 months to live.

Neither of us do any kind of drugs, other than what the doctor prescribes. But I am now beginning to get desperate and so is she. Does anyone know of something that will help? What about Cannabis or CDB oil (or what ever it is). She can not take anything by mouth because it will come out her G tube and into a bag. She has a J tube that her feeding and all her meds go into.

She doesn't have a lot of pain, but she does throw up quite a lot. That's why they put the G tube in, but it only sort of helps. She also has a bad cough that they can not figure out as to why.

I will take all the help I can get.

Thank you,

David and Debbie Engle

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vwandstudebaker
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13 Replies
Teddy811 profile image
Teddy811

CBD oil under the tongue has helped me with nausea and sleeping. My cancer is Follicular NHL so different treatment but may be worth a try since she is coughing and not able to eat. My sympathy for you both having to go through this.

Shar0n profile image
Shar0nVolunteer

I don't know anything about CBD oil but in your situation I would certainly try it. I wonder could it be absorbed through the skin. Maybe someone else will comment. Wishing your wife all the best and I will keep her in my prayers.

squashman profile image
squashman

Hi

Sorry ro hear of your wife's condition. It doesnt sound good. I was diagnosed with aggresive cd8 t cell lymphoma in oct 15. Thankfully it was diagnosed reasonably early. Had 6 courses of CHOP treatment which put me in remission then had a stem cell transplant in may 16. Now back playing squash.

Based on my experience suggest CHOP treatment to your doctors. Can I ask which type of t cell lymphoma your wife has

BLP1211 profile image
BLP1211 in reply tosquashman

What is CHOP?

squashman profile image
squashman in reply toBLP1211

CHOP is the name of a combination of cancer drugs used to treat NHL and chronic lymphacytic leukaemia (CLL)

C - Cyclophosphamide

H - Doxcrubicin

O - Vincristine (Oncovin)

P - Prednisolene - steriod tablet

Google CHOP treatment for more in depth info

Andilynn profile image
Andilynn

David and Debbie, I am so sorry you have to go through this. People seem to have very good luck with CBD oil under the tongue. Perhaps this will bring some relief. Prayers for both of you.

BelindaTupper profile image
BelindaTupper

So sorry to hear of this desparate situation. Not sure if it will help, but a friend of mine has a G tube with lots of vomiting and they moved it further down his digestive tract. It seems to have reduced the vomiting. I do hope you find a solution. Take care.

1Anj1 profile image
1Anj1

Hi David and Debbie

I would ask if there is any trials going on locally.

Something like CAR-T.

As for the cannabanoids then they are available usually in tablet and oils-oral

Also then are available as a suppository too, this bypasses the digestion process and absorption from the intestine. Please check the dosage matches the delivery method.

oncloudnine profile image
oncloudnine

CBD oil has had some amazing results. I believe the CBD oil from marijuana is superior to CBD oil from hemp.

BLP1211 profile image
BLP1211 in reply tooncloudnine

Can you recommend an oil from marijuana and where to purchase it. I am presently taking CBD from hemp, 6x concentrated...whatever that means.

sueellen58 profile image
sueellen58

I was diagnosed with t-cell NHL NOS in Jan 2012, went thru CHOP- with in 2 months of finishing it, the cancer returned, went thru 2 more sessions of chemo, each time with no luck. Had a stem cell transplant- brother my donor in June of 2014. Scans as of beginning of this month remain clean- no signs of the NHL. I went to the Siteman center in Saint Louis to a Dr Cashen.

Judyhoneycomb profile image
Judyhoneycomb

So sorry and hope something can help...thoughts and prayers for all cancer patients. So many types...

vwandstudebaker profile image
vwandstudebaker

Too late. She passed away from her cancer on 4/25.

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